<p>Latetoschool, you are one amazing lady.</p>
<p>What you wrote about your first doctor reminded me of something I read long, long ago by someone else I greatly admire. </p>
<p><a href=“http://cancerguide.org/median_not_msg.html[/url]”>http://cancerguide.org/median_not_msg.html</a></p>
<p>You have the strong will. You have a purpose for living and a commitment to the struggle. You will rage mightily and well.</p>
<p>Wishing you all the very best,
MM</p>
<p>Please don’t jump on me for saying what I am about to say-- I say it with as much desire for support and concern as all the other posts here. That said, I am posing a gentle suggestion to those of you encouraging or cheering on a potentially adversarial relationship with treating physicians. [Note: I am NOT saying at ALL that LTS has done this- she hasn’t.] Certainly if a doctor-patient relationship isn’t a good fit, then time for a change. But the battle should be with the illness, not with the doctor. Sometimes patients feel little sense of control over their illness, and sometimes the feeling of lack of control can accidentally roll over into the relationship with the doctor. From what LTS has posted on CC, she is clearly a bright, independent, diplomatic and strong-willed individual, who I am sure will put all her best skills to use in taking this life challenge head-on. There is nothing wrong with wanting more information as to why a particular medicine is being ordered, asking to discuss the pros and cons, and discussing alternatives or treatment strategies. Knowledge is power. If an anxyolitic or sedative isn’t necessary or desired, then certainly discussing this with one’s doctor is appropriate. It is better to have a good working relationship with a doctor. They have experience, training and responsibilities in the care and management of their patient (which of course includes the responsibility to discuss the treatment and the risk/benefits of all recommended treatment). Yes, it is good to self-advocate, but it is better to forge a good working relationship with a doctor, or in some cases, as LTS has done, change doctors (though sometimes it is hard to find someone else in a timely fashion who is available quickly, has hospital priviledges and is on one’s insurance network, if that matters). As for the steroid, again, there are risks and benefits of steroids, and it sounds like LTS had the opportunity to discuss these with the prescribing physician and is electing to hold off for now. If things change in her condition, she might choose to revisit this. Unfortunately, one of the side effects of steroids is its effect on mood, and the psychiatrist might be needed then. So, again, its a good idea to have a decent working relationship with one’s treating docs. I agree, if one wishes to terminate a relationship with a doctor, it is helpful to have this documented in the patient’s chart. It protects the doctor as well as the patient, as the doctor doesn’t want to be sued for patient abandonment or something. Doctors, especially those doing inpatient work, usually have a relationship with each other, and refer back and forth. So, if one doctor perceives the patient as difficult, this could possibly, inadvertently, affect the overall view of the patient. It stinks, but it is human nature. </p>
<p>When my s was in the hospital last spring with his broken leg, he kicked up a fever of unknown origin, and it lasted for days. The surgeon thought it was probably a normal reaction to surgery, but just in case, called in an internist. All labs were negative (normal blood cell counts, no evidence of infection, no blood clot, etc) but he decided to order a broad-based antibiotic just in case. My s took one dose, but then refused to take any more when the labs all came back as normal. First, he had had a very bad, potentially fatal reaction to an antibiotic in the past that landed him in the hospital for 4 days, and second, he is philosophically opposed to taking what he felt was an unnecessary antibiotic and potentially lowering its efficacy in the future, if needed. Both are perfectly reasonable reasons not to take an antibiotic. But, my s was pushing to be discharged (we were in Calif at the time and he wanted to try to get back to college in another state, and we live in yet another state across country). Well, needless to say, if s wasnt going to take the antibiotic, he wasn’t going to get discharged (especially as we were from out of town with no local treating doc to transfer care to). The nurses tried to talk him into taking the meds, and he had a very eloquent conversation with them about his position. He asked to speak to the internist. They discussed the situation, and the internist said he could call in an infectious disease specialist to help evaluate any possible additional causes of his fever (you can pick up some nasty bugs in hospitals). But, it would take a couple of days to culture out the labwork, and he’d be stuck in the hospital until then (unless he chose to leave AMA (against medical advice), at which point the insurance wouldn’t pay the bill). Lousy situation to be in. Oh, and since he’d already started the med (took one dose), it is better to complete a course of an antibiotic than to stop mid stream. That can cause an increased resistence to antibiotics in the future. So, son reluctantly agreed to take the antibiotic. His fever came down and he got discharged, and we were able to get him back to college. What made his fever go down? We will never know.</p>
<p>Please don’t attack me for presenting another side. Maybe, hopefully, I misread the cheering on of doctor-trouncing. All I am saying is that it is best to have a good working relationship with one’s docs. Sounds like LTS is doing her best to establish that (and to put together the best team for her care), and again I wish her all the best in this new life challenge. She has all the skills to be as successful in this one as she has in all the others we have read about here. I still smile when I think about her story of the long que at the airport, and her daughter’s telephone job interview!</p>
<p>lts - I also wanted to ask you to please keep posting with us. My mom has said talking about her breast cancer helps ‘take the scare out of it’. So just keep it coming. We want to hear it all…and it will help.</p>
<p>Btw…my cousin, who was diagnosed with metastatic breast cancer in her mid-thirties, is still here too. They told her it was in her bones and she had a couple of years. That was almost 5 years ago and she is not going anywhere. She takes the chemo and has been in studies at MDA…everytime one study ends, miraculously she qualifies for another. She has a disease, but she has quality of life and she is fighting…and giving that disease h<em>ll. I realize we are talking differenct cancers…but I have to agree with the previous posters… SOMEONE has to be in those survivor percentages. So why the h</em>ll should it not be YOU? </p>
<p>(Sorry…d@mn, friggin’ cancer makes me cussing mad.)</p>
<p>Oh, LateToSchool,
I’m so sorry. What an inspiration you are! Keep fighting, do all you can to beat this, and let others pick up the slack when needed. My prayers for you and your daughter.
Renee</p>
<p>This is a side note to the main thrust but LTS demonstrates why patients have to be their own assertive advocates, not passive recipients of a medical protocol.</p>
<p>A story: about a quarter-century ago, I was in hospital for a couple rounds of surgery in a two-month period. After one of them, I was sharing a room with a middle-aged man (heck, at the time I thought he was old but he was probably not much older than I am now) whose relatives would come and visit frequently. They would ask questions about his condition, he would ask them questions, and they would spend half the visit speculating on the meaning of this or of that. When the doctor came around they Didn’t Ask One Darn Question. They stood around like mute statues, the patient giving monosyllabic answers to the doctor’s questions.</p>
<p>TheMom (well, this was before she was TheMom) was visiting me during some of these episodes and just shook our heads.</p>
<p>LTS, my thoughts are with you. Keep those doctors on their toes, and dismiss the wrong ones until you find the right ones!</p>
<p>TheDad,
</p>
<p>Your anecdote struck home with me; it is generational. I didn’t understand it until my mom (now 80) explained that, in her day, the doctor was the authority figure. Families understood their role to exit the hospital room during exams, and never dream of “interfering” or “badgering” a doctor with questions. </p>
<p>By contrast, today there is so much information shared (among people by internet, with websites) that it’s possible a patient could bring a source to their own doctor that will open up a new avenue of exploration for the doctor. </p>
<p>That, and a different sense of authority in our society. Doctors are healers and researchers, but not the High Priest.</p>
<p>The patient communication is a two-way street. I’m very proud of my own cousin, who was brought to Johns Hopkins U. after a nationwide search, in order to teach medical students How to Communicate…with patients, other staff, and so on. He’s full-time there, and this is all he teaches. </p>
<p>From LTS’s story of the doctor she had to dismiss, I could imagine that scene so well. What the doctor did was fail to factor in the importance of Hope. Yet this should be understood by now. The chemical response of the body when the brain says, “I have hope, I can, I can…” must be real. I’m no scientist, but there should be established literature on this by now, no?</p>
<p>LTS, have a good and powerful day today.</p>
<p>LTS–You go girl. Stick with your oncologist, he is a winner. Lose the psychiatrist and don’t look back. Realize that, in the beginning, you are often “assigned” staff physicians at the start of an illness. You can then get your wits about you and get selective on who you want on your team. This will not be looked upon negatively by anyone. Certainly not your oncologist. If you are at a major center, there are plenty of psychiatrists, radiation oncologists, etc to choose from. DO NOT HESITATE to ask your oncologist for a referral to someone else for a “second opinion.” </p>
<p>As a gynecologist, I diagnose and refer many ovarian and cervical cancer cases to gyn oncologists, radiation oncologist, medical oncologists. I see patients get opinions and care from local subspecialists as well as regional and national speicialists. I am the first one to tell patients that they have to continue to speak up, be their own advocate, and select team doctors that they are most comfortable with. I have some patients who need to “be told” everything, who feel paralyzed by their illness and too insecure to try to make any decisions. I have others who “google” and try to make decisions they have no business making. You represent the absolute best kind of patient. You will educate yourself, seek out the best of care, and challange what needs to be challanged. </p>
<p>Having gone through the diagnosis and treatment of malignant melanoma, with a second scare over a suspicious abdominal mass, I do know both sides of a similar story. </p>
<p>Do remember that there will be times in your treatment that you WILL NEED STEROIDS or other meds that you absolutely don’t want to take. Don’t totally ignore the best intentions of your doc’s. But there is absolutely no reason why you NEED to take sleeping pills or other mind altering drugs if you choose not to. Yeah, they can relax you alright. Sometimes an SSRI can help you with overwhelming anxiety or depression. They can sometimes help you think more clearly and help to pull you up out of a hole. But you sound like you are not in a hole. And of course they can also keep you from thinking clearly at a time you need to be able to think. </p>
<p>So take an active role, be a patient when you need to. And come here when you need to vent or ask questions. You have a world-wide network of parents here who want to listen, cheer, pray, and give back to you.</p>
<p>Dear LTS -</p>
<p>Wow. Now we all see what’s wrong with the internet. We all feel like we know each other so well, and we care about each other, but we can’t REALLY be there when we’re needed. 
Darn.</p>
<p>Know that we’re rooting for you. You’re fighting the only fight that matters.</p>
<p>Love, Weenie</p>
<p>LTS, I read in your post about declining sleep medication. You know, I really understand what you’re saying there. Sleep meds are meant, aren’t they, to be for your ease if you so choose it. To decline it is not being “uncooperative with medicine.”</p>
<p>As someone who has had problems with sleep, I find sleep meds are easy and helpful for addressing sleep, BUT…they do not let you remember your dreams.
For me, anyway, dreams are really important information; they tell me what I’m afraid of, and what battles I’ve resolved in my dream…well, it’s work that’s been done (while I’m asleep, hey that’s cool!). So if I can think about dreams in my conscious state, I feel I am further along in self-understanding. </p>
<p>To me, the value of getting to sleep on time isn’t as great as having access to remember my dreams the next morning. In your work now for your health,
it seems like knowing and remembering your dreams could also be helpful. You’ll know which fears you’ve worked out – symbolically – and feel that much stronger. And also have the conscious feeling of strength of a battle won, which to me is double good as just having it subconsciously. </p>
<p>I also found after taking sleep meds (Ambien) for several weeks, and blotting out my dreams, when I went off the medicine I then suffered terrible nightmares that were upsetting/scary the next morning. A backlog, in other words.</p>
<p>If you can get by without the sleep meds, more power to you (says I). If it changes, you’ll know that too.</p>
<p>sunnyflorida-
Very well said, especially with that vantage point as both patient and doctor. Hope you are doing well. </p>
<p>Meds to help with sleep or anxiety are appropriate, if absolutely needed and/or wanted (neither seem to be true at this point for LTS). Better is the opportunity to talk about the issues, process the myriad of feelings going on as a newly diagnosed patient, rallying the emotional troops for the battle. My vote (for obvious reasons) is to get a psychologist or counselor, not a psychiatrist, at this point in time. In today’s healthcare system, the psychiatrists are being relegated more to med management. That isn’t necessarily bad, but it leaves the therapy work to the psychologists and counselors. Clearly having the opportunity to process, to vent, to discuss coping skills and strategies is more in order here. We here on cc are part of that team, but as weenie said, we arent right there for you. You are clearly able to go after what you need, LTS. You go girl. PM me if you would like any help finding good psychologists in your area.</p>
<p>LTS, thinking of you and hoping for the best.</p>
<p>But, jym626, I simply do not have the time right now - or the resources - to devote to educating counselors and the like. I really don’t. </p>
<p>This psychiatrist who came to see me? I am wondering if you can imagine that as he is sitting there talking to me, someone knocked on my door and came into the room, and he told them to please come back later. Without asking me. Without even considering me. Without even asking the person who they were or what they wanted. He actually told the person to come back “later”. Totally astonished, I said, um, no, wait, who is the person who wants to come in - get her back here. Right now. So she comes back. I asked her who she was, what did she need? Turns out she’s the nurse who needed to take my blood for my oncologist. So I said to the psychiatrist, you don’t tell her to come back. I don’t care how much alphabet soup is tacked on to your name or how those letters are arranged or what institutions conferred them. You do NOT make these decisions for me. You do NOT make the decision who comes in this room at some moment and who does not. These decisions are MINE. And I will make them - ALL of them. This woman needs to get some blood so some test can be run so my oncologist can make some decision about something that he is doing that has something to do with fighting this cancer - which is what I hired him, hand selected him, to do. So she will come here right now and do what she came here to do. What will NOT happen is that she will NOT be told to come back at some time when you think you are finished chattering at me about some anxiety medication that I am stone cold not going to take. My oncologist’s requirements come first, period. </p>
<p>And so that is what we did. She took my blood. The psychiatrist waited. Then we resumed our discussion, though I have no confidence he learned anything at all from the exchange. </p>
<p>I do agree that it is very important to have excellent relationships with one’s doctors, and that is what I feel I have with my oncologist. I have a very, very high degree of confidence in him. And I am also absolutely, 100% certain that if we decide we are defeated, then, it’s game over, and, what we decide to allow into our minds is just as important as the chemicals that we allow into our bodies, and negative input will manifest itself into our lives, often in real time. </p>
<p>I sort of wonder what is the percentage of single parent Americans who - without one dollar of social support or charity, and with no living family members - pull themselves from a living in homeless shelter to home ownership, to head of a thriving small business with a six figure income, and deliver their children to college (and at that, almost to the door of Harvard)? Could it be 1% - 6%? Is it maybe higher? Lower? Whatever the number, I might be an anomalous sort of person. No guarantees I’ll win this really horrible, scary fight, but, the fact that I’m the self-appointed CEO of it has improved my chances exponentially. It at least gets me a little closer to the 6% point, probably.</p>
<p>Oh, latetoschool, a big bowl of cyber-chicken soup coming your way . . . “It couldn’t hurt!” You are in my thoughts as you meet your greatest challenge.</p>
<p>Kudos for taking charge of your own treatment and speaking up for yourself, as well as recognizing the right doctor for you. From having been through some medical stuff with my daughter this year, let me give you some advice, if you are not doing it already. Take notes at every appointment, and write down questions as you think of them between appointments so that you don’t forget to ask them. You’ll be amazed how you think you remember a particular number or fact, but on checking your notes find that you have it wrong. If the time comes when note-taking is hard for you at appointments, have a friend come along to do that. That’s a small, concrete task that lets your friends do something actually helpful.</p>
<p>Ken Wilbur’s book - Grace and Grit; I’ve read it several times - truly a story of inspiration and of someone who beat the odds many times.</p>
<p>lts: as a chaplain, I always find it important to ask a person’s permission to pray for them before assuming so. Not everyone fits the bill of wanting people to pray for them. Then I ask what it is they would like me to pray for if they say yes. If this is OK with you, then please let me know.</p>
<p>LTS-
I am in continued awe of your spirit, and that is what you need to take the best care of. You do not need to educate the counselors. That shouldn’t have to be on your list of job responsibilities as CEO of this newly formed company. Hopefully your oncologist knows just the right psychologist or counselor who specializes in this area and who will “get it” right away, just as he did. Obviously that pinhead MDiety psychiatrist didnt. Goodbye to him. But, I must respectfully disagree with one thing you said. You started by saying you didn’t have time. Yes you do. You need to take care of all of yourself. Your brain is in great shape and is one of your best attributes. Take care of it and the spirit it houses. Please. You can’t afford not to.</p>
<p>LTS, I can’t imagine the percentage of single parents who manage to accomplish what you have is even as high as 1%. Compared to that, 6% looks large!</p>
<p>I believe that there are published reports that cancer patients with a fighting attitude do better than passive patients.</p>
<p>LTS, I was so happy to see that you are enjoying the drop off day story thread. <a href=“http://talk.collegeconfidential.com/showthread.php?t=398024[/url]”>http://talk.collegeconfidential.com/showthread.php?t=398024</a>
What a great psyche you must have to be able to savor a good story despite all you are dealing with. Good for you! :)</p>
<p>LTS: many years ago I had a surgery wherein I was warned of a 1/10,000 chance of a certain complication- that sounds like a tiny teeeny slight possibliity, but when it happens to you, it happens 100%</p>
<p>Some one is that 1% or 0.01%, why not you.</p>
<p>Reading medical charts is sometimes part of my work and I am with you on keeping the charts accurate, it is amazing the way SOME docs will pigeonhole some one unusual as uncooperative- just because a ton of people, esp. our parents generation think the Doc is God- which is really unfair to themselves and the Doc, doesn’t mean we are uncooperative for making our own choices. I had a medical issue which first began 10 years before properly being diagnosed, it affected my life and my family and my work ability over the years, but no one ever put everything together, until I figured out the problem, accidentally, had minor surgery and was “cured”</p>
<p>You and only you live your life, none of those docs will suffer the side effects of the Tx, you and only you can make the final decision about each step- they owe it to you to present you all options with details. </p>
<p>It is utter hubris on the psych’s part to think you are uncooperative not to want to be in a purple haze!</p>
<p>We got your back, girl!</p>
<p>LTS,
I found a psychologist with experience dealing with cancer most helpful – it wasn’t the cancer I needed to talk about, it was my battle plan and everything else in my life I needed to talk about. Perhaps your current onc might have some recommendations for someone should you want to pursue this route at some point.</p>
<p>P3T, I found my dreams made a LOT more sense after I was diagnosed. All the symbolism finally made sense. I quit getting on planes and escalators and trains that went nowhere. Now they take me places and to people. And yes, I can tell what “work” I still need to do via my dreams.</p>
<p>LTS, wishing you a powerful and healing day.</p>